Learn About Callie's Journey with CHD

My photo
Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Friday, June 8, 2018

Staying in Cali for a little longer....

Due to some results of Callie's heart Cath, her cardiologist at home and her team in California felt it best if she remained here for additional testing. To give a little detail of her heart cath results , her narrowing in her aorta required some ballooning and more than likely will need to be surgical address in the future. Her fenestration was tested to see if it could be closed but this increased her fontan pressure to high, therefore they did not close the fenestration.

Her oxygen saturation is lower than what it should be even with having a fenestration. Therefore, she will be meeting with a cardiologist here who is a Pulmonary vascular specialist. He has ordered a cardiac MRI which will be performed on Monday and we will meet with him on Tuesday. She has already completed another test that he ordered also, which watches what her oxygen does after walking consistently for about 5 min. The team here in California also wanted her to meet with a pulmonologist and we are hopefully meeting them also on Tuesday.

All this is to determine what they can do to get her oxygen up to where it should be for her current fenestrated fontan anatomy. Something to keep mind, Callie was a high risk fontan to begin with and we hope staying and seeing these specialists will keep us ahead of any majors problems in the future.

Please pray for Callie as she has to remain still for 1 hour for this MRI and everyone's goal is to not to have to sedate her during this procedure.

Thank you for the continue prayers and support during this time. We are all ready to be home but we know this is where Callie needs to be at the current moment. We are making the best out of trip, doing fun things with her when we can. Very thankful for the Ronald McDonald House, she is having a blast playing in the playroom every afternoon and has made a few friends😊 We are thankful she is where she needs to be and we have such a great team of doctors standing behind her, they have all been working so diligently to get everything schedule as quick as possible, so we can hopefully get home soon.

As soon as we know more, I will update.



Monday, June 4, 2018

Pre-Op Day for Heart Cath

Pre-op went well, everyone was very pleased with how Callie is doing. They all commented on how great she looks😊 So happy!! Her heart cath is scheduled for 8am tomorrow and prayers that we do not get bumped. Prayers for an easy cath with no intervention needed and she can be discharged the same day to rest at the Ronald McDonald House.

Callie is in great spirits! Here are some pics from today.